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Question about Braf and Mek side effects
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Question about Braf and Mek side effects

› Forums › General Melanoma Community › Question about Braf and Mek side effects

  • Post
    • March 19, 2019 at 1:24 pm
    Dympsd
    Participant

      My husband is having pretty awful Braf/Mek side effects that include vomitting, Rigors, temp, diarrhea, lethargy accompanied by elevated liver enzymes and C reactive protein.. My question is, Is this just a matter of enduring until he can no longer tolerate and then have a break or when is the time to say well this is enough of this particular therapy? Anyone have any experiences? We know this therapy has given us a good result so far and feel we need to keep pushing through the side efects but obviously it takes its toll on the body and is exhausting for us both. I do feel for anyone going through this alone.

       

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    • Replies
        • March 19, 2019 at 1:32 pm
        Gene_S
        Participant

          First are you seeing a melanoma specialist and what does your oncologist think about this? Is he trying to manage the side effects?

          • March 19, 2019 at 1:43 pm
          swalters1038
          Participant

            I was told to go off the drug and wait for symptoms to subside and then go back on the drugs.  I had bad cold/hot swings up to 104 and woudl go off the drug for a few days.  The side effects would go away.  There is a protocol that shoudl be followed based on side effects.  I'm on the novartis set of drugs and it is pretty straightforward.  I jsut don't ahve them in front of me.

            Cheers

            Steven (3c May2018)

            • March 19, 2019 at 1:47 pm
            marta010
            Participant

              Hi – my husband had similar side effects which were managed by reducing the dosage to 3/4 of the full dose.  Althought the BRAF/MEK combo is supposed to have fewer side effects, he was not able to tolerate the MEK and is only taking the BRAF(Tafinlar).  He's taken a few breaks – 2 or 3 weeks at a time – when the side effects were too severe to continue.  He's been on this for 5+ years with stable results after initial tumor reduction.  Occasionally has issues with adrenal insufficiency but the other issues (high fevers, rigors, etc have dissipated).  I would ask his oncologist about modifying the dosage and taking a break.  I hope you're able to find the right mix.

              Ann

              • March 19, 2019 at 5:17 pm
              DZnDef
              Participant

                Hi there!  I have been on a couple of BRAF/MEK combos since September of 2016.  Tafinlar/Mekinist at first which gave me shaking chills and fevers.  My oncologist cut my dosage in half and put me on 10mg of prednisone.  I don’t think this is recommended any longer.  I switched to Braftovi/Mektovi this past October and have had only mild fevers off and on at full dose.  You should definitely discuss with your oncologist.  Has he tried any immunotherapies yet?  I hope he gets it all sorted out soon.

                Cheers!

                Maggie

                • March 20, 2019 at 1:49 pm
                jrtufo
                Participant

                  I've been on this combo for 18 months.  I sufferred from severe chills/fevers but with a reduction of the daily dose (1.5 mg of the Mek + 100 mg 2X per day of the Taf) I've been coasting for about six months.  I'd recommend pushing the doc for a reduction so as to keep away from the steroids as much as possible.  And you are right;  it sucks going through this alone…

                  • April 29, 2019 at 12:34 am
                  Charlie the Unicorn
                  Participant
                    Hi, I am having horrible side effects from Braf/Mek therapies. I feel alone. When people ask about it, many don’t know what rigor is like to go through. One night it with bone and joint pain too. It felt like I was in a medieval torture chamber. My oncologist has worked with me on dosages and other Braf/Mek combinations. I am trying Braftovi/Mektovi right now. I am trying to manage 4 pills of 75mg each. By day four I had a really bad rash affecting my upper body with face and neck needing ice towels. This was in addition to nausea and painful headaches. I stopped taking the pills feeling better 5 days out. I know people love me and are trying to help. I look fine, so some people think I am not pushing through. These drugs also make me weak, as in opening a bottle water hard to do. Staying positive and keep trying is my morning pep talk. My next CT scan is 5/10. I hope to see good results, something, just something. I have metastatic melanoma. Does anyone know what happens if I get another skin cancer? MOHS?
                      • April 29, 2019 at 1:00 am
                      Charlie the Unicorn
                      Participant
                        For the original post. I have gone through different drugs, dosages, breaks. The current effort was to take 4 pills of Braftovi 75mg for 1 week and then 3 weeks off. I have not been able to do that. So my oncologist said interleukin 2 was next. The Braf/Mek is 60% effective, interleukin is only 2% effective. I asked about Active Cell Transfer, but at that time I was on steroids (Prednisone) and they said I was not a candidate. I am no longer on steroids so I will ask again. I’ll post what happens. I also have a second opinion oncologist that I will talk with too. Staying positive and keep trying.
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